Tag Archives: plagiocephaly

I realized that I never posted any follow up after that emotional first helmet post. (And once again, thank you so much for all those kind comments and support!) So I guess now is a good time to review everything that happened after that. (Which isn’t very exciting, really.)

The total time he wore it was about three months. The orthotist says most babies average 4-6 months, which is what she initially told us. I am really happy that it ended up being less time!

So first, a few more details about the how and the why:

We went to one of the local Hanger Clinics, and worked with a wonderful orthotist. The helmet is basically a mold. They scan the head and then I guess they project out what they want the measurements/shape to be, and make a foam model of that, and mold the helmet from that. So it forces the head to grow in that direction. The helmet is hard molded foam with a hard ‘shell’ outside.

They have to leave room for normal head growth–they make it a certain maximum diameter. If the baby’s head grows beyond that measurement, then the helmet is obviously no longer worn.

There were two things that the helmet was supposed to improve for Emmett’s head shape. First was the flat spot (plagiocephaly), obviously; he had an asymmetry of 10mm. The other was the roundness of the entire back of his head. This is measured as a percentage of length versus width. “Normal” people have like 75%. Emmett’s started at 95%–meaning it wasn’t long enough for the width. The back needed to round out.

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Emmett took to the helmet like a champ. The weaning-on process takes about a week, as the baby wears it longer and longer until it’s up to 23 hours a day. By then we were getting used to it, and soon enough all that emotion had completely dissipated. I found him really cute in his helmet, and it just became part of him. I kind of forgot to notice it anymore.

We did get a few comments here and there, from strangers while out in public, or from acquaintances looking at photos. I was relieved that the comments weren’t mean-spirited or anything, either it was a polite question or something about football or whatever.

Getting him dressed was a pain–we tried to only change him during his helmet break. There were plenty of times when we had to change his clothes while he had his helmet on, and we would usually put on his onesie from the bottom up. That was really annoying. Though, a few weeks ago, we noticed that our nanny was able to get some of the onesies over his helmet, which made things a little faster and easier.

Also, his head was smelly and sweaty when we took the helmet off. Really, it was the helmet that was stinky–but during the helmet break, it wasn’t pleasant to smell his head. I obviously tried to get in extra snuggles and kisses, but the odor was very noticeable.

Emmett had some skin issues with a few contact points–along his forehead and along the right side of his head, especially his right ‘sideburn’. Every time we took off the helmet, he would scratch at the back/right areas of his head. It was adorable and kind of pitiful. On our visits, the orthotist would shave down the foam to make it more comfortable. The redness and irritation never stopped occurring, though.

If he was really, super tired, sometimes he would kind of grab at the edge of the helmet as if to take it off. And sometimes Malcolm liked to grab the helmet if Emmett’s head was close. And Emmett figured out how to undo the velcro! He would only do it while he was lying down drinking a bottle, and he would do it over and over, kind of meditatively.

I honestly thought one of us was going to suffer a broken nose. When he was tired, Emmett would kind of drop or throw his head down (you know what I’m talking about, right?), and he bonked us in the face with the helmet numerous times, often on the nose. It hurt! A lot!

At the one-month follow-up appointment, Emmett’s asymmetry had shrunk to 4mm! This was unusual–it usually happens much slower, so the orthotist was very surprised and pleased. She said we must have gotten the helmet on right before a growth spurt, which is fantastic timing.

By the second month, it was down to 3mm, and then we were basically waiting for the length/width measurement to go down. She wanted it to get anywhere in the 80s. I think at that point it was 91%. But it still looked much rounder in the back than it used to:

A couple weeks ago, his head measurements were getting close to the maximum–like two millimeters. She cut out a section of the foam in the back (so that part was ‘open’ to the inside of the outer shell, but his head wasn’t directly in contact with it) to give some more room. She said we could continue or stop now–we said we might as well go as long as we can.

Last week, we noticed an area of red, scaly bumps on the back of Emmett’s little head. I wondered if it was irritation from the new edge of the foam. So I took him in, a week before our scheduled appointment with the orthotist. She had never seen that kind of reaction, though she did determine that it lined up with the foam edge. His head circumference was basically at the max for the helmet, and his length/width percentage was at 90.1%, which is so tantalizingly close to the goal.

So we decided that we should just stop the helmet. (Andy was out of town and we’d discussed it by phone earlier, so I was glad that I wasn’t making the decision alone on the fly.) Apparently there’s usually a weaning off process, where the baby wears it only for naps and bedtime. That irritation needed to heal, though, so we figured we’d try for quitting cold turkey.

She took another scan of his head to compare, and gave us a little ‘graduation’ certificate for the scrapbook.

It’s now been a few days with no helmet. Emmett has had no problems going without it–I guess he doesn’t miss it! And we don’t either. I was happy to discover that his head stopped smelling the very next day. The irritation on his forehead and sideburn are fading and healing, though the bumps on the back are still there.

I was looking at a few photos from just recently, and already the helmet looks kind of odd and out of place. I guess I got used to him looking like himself again right away. I sure am loving being able to kiss his head while snuggling him.

Also, his hair has grown bigger. It used to stick up in funny shapes, but now it’s too long for that. Somehow in the back it puffs up and over to make his head look much bigger (and rounder) than it really is. I guess that’s good?

So now that both of our babies are headgear-free, we have realized that um, dang, these babies can look reaaaally similar sometimes. We got lazy about really looking at their faces! I am excited to be able to focus on both of their adorable selves the same way again.

At our two-month appointment in January, I asked about it and was told not to worry (we saw a nurse practitioner for that one, not our regular doctor). At the four-month, I asked again, because they were still flat. Our pediatrician said it would probably be fine, but she said we could have the craniofacial specialists check it out.

I was simultaneously scared to have it confirmed and not have it looked at. But I did the grownup thing and made an appointment. (It’s a huge university/hospital complex at the top of a big hill in northwestern Portland. Huge buildings and structures everywhere you look–honestly I felt like I was in the Jetsons or something!)

Anyway, the woman we saw there was wonderful–very warm, loved the babies, and was very open with us. It was clear that she had no agenda, wasn’t going to automatically make us do helmets, but was very objective. She measured their heads, and sure enough they were flat. Emmett’s worse than Malcolm’s, by a lot. We’d already been able to see that, but the numbers were stark. There’s a certain measurement difference cutoff that would make a baby eligible for a helmet; Malcolm’s was below, and Emmett’s was above. But both have acquired positional plagiocephaly (the medical term for flat head).

She gave us exercises and stretches to do with both of the babies, to work on their torticollis, which would also help them move their heads and necks better. She wanted us to have the babies do fifteen minutes of tummy time every few hours, which was WAY MORE than what we’d been doing, and quite frankly, way more than the babies wanted to do. We were to come in again two months later to check the progress.

We did fairly well with the tummy time, and the babies got a lot better about tolerating it. We would give them toys and squishy books, or lay them on our laps facing out/down, and they would be okay. The stretches really helped their neck tightness ease and loosen. We also had them do a lot of supported sitting–in the Bumbo, activity seat, jumperoo, exersaucer. Lots of playtime not laying on their backs.

By the follow up appointment, Malcolm’s head had gotten noticeably less flat, and his measurement difference dropped in half. Emmett’s had also gotten less flat, but his hadn’t improved as much, and he was still over the ‘cutoff.’ Too flat.

Time for a helmet.

The specialist was again very honest and caring. She told us that after a year or two, heads/skulls aren’t really that malleable anymore, so if you wait, a helmet either takes longer to round out the head, or won’t work at all.

Three weeks ago we had our first appointment at the orthotist so his head could get scanned for his custom helmet. Doesn’t he look like an adorable little Ewok?

Last week we went back to get the custom-fitted helmet.

The night before, I took a special photo of his cute, happy little self.

At the office, still happily unaware.

The doctor had to adjust the helmet openings to fit his head. It’s made of molded foam and has a rounded back to guide his head growth over time.

Here he is back at home, getting used to wearing the helmet for an hour. This first week is a schedule of increased time wearing it so he can get used to it. Starting at the end of this week, he’ll wear it 23 hours a day. He’ll have it for 3 to 6 months, depending on his growth.

It’s been a few days now, so he’s worn it for hours at a time, including for naps. He seems to be doing just fine with it. When we go to put it on him, he moves his head around to look at it, and then I swear, he recognizes it and lowers his head so we can put it on. When we take it off, his head is sweaty and his considerable hair is plastered to his forehead. But that’s just how it goes, so we’ll be washing his hair and cleaning the helmet every day during the one-hour break.

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Okay, so those are all the facts about Emmett’s helmet.

Now for my feelings.

I’ll sum up: as the orthotist put the helmet on him that first time, tears welled up and rolled down.

When the craniofacialist confirmed the flatness for both and that Emmett would probably need a helmet, I felt my heart sink. Sadness. Guilt.

My poor little babies. Their heads were perfectly fine when they were born. But since they slept in the Rock N Plays pretty much all day and night for the first however many weeks and months, and they both leaned their heads to the right, they got flat spots on that side. I could have held them more. Or forced them to sleep in the co-sleeper (they didn’t sleep as well in there and also spit up more). I could have carried or wore them more. (With naps, feedings, and pumpings, and two babies…I don’t know how.)

The specialist told us that twins are extra susceptible to flat heads, especially Twin A’s (the twin closer to the ‘exit’, if you will). Emmett was our Twin A and his head was wedged in my pelvis for the last three months in utero (Malcolm was breech; neither of them ever flipped), so I guess it’s logical that his little skull already had some extra pressure on it.

So in theory, it happens to a lot of babies and it’s not my fault. But I still feel like it’s my fault, like I let him down, like I didn’t do my job. I dreaded the fact that something was Officially Wrong with one of my babies. We have been so incredibly lucky that our babies have been so healthy thus far. I know that many twins have a lot of medical issues right away, and that sadly many babies come down with flu, RSV, whooping cough, and all kinds of other scary things. We’ve avoided all that so far. I also know that flat heads and helmets aren’t really a health problem, and that he’s still a healthy baby, and I should shut the fuck up with my whining.

But oh, my sweet little baby. We already get looks and comments all the time because they’re twins–and now there’s another reason people might gawk and say dumb shit. He won’t know any better, but I will. I know that we’ll be glad to be helping his head round out, and it’s only temporary, and he won’t remember, but I feel bad that we’re making him look ‘different.’

I’m getting used to it, sort of. I’m happy that Emmett doesn’t care and is his usual self. I still think he’s really cute. It’s harder to kiss his adorable little face with the helmet in the way. And I still have a little sinking, sad feeling when I see it. My poor baby.

Nobody’s perfect, and everyone has a ‘thing’ or issue. But I didn’t think I’d have to accept imperfections for my small babies quite yet. I know that over time there will be plenty more and it won’t be a big deal. Maybe this first hurdle is the biggest.